Enabling the Participation of People with Parkinson's and Their Caregivers in Co-Inquiry around Collectivist Health Technologies

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in ‘Parkinson’s Radio’ — a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research

Future Opportunities for IoT to Support People with Parkinson’s

Recent years have seen an explosion of internet of things (IoT) technologies being released to the market. There has also been an emerging interest in the potentials of IoT devices to support people with chronic health conditions. In this paper, we describe the results of engagements to scope the future potentials of IoT for supporting people with Parkinson’s. We ran a 2-day multi-disciplinary event with professionals with expertise in Parkinson’s and IoT, to explore the opportunities, challenges and benefits. We then ran 4 workshops, engaging 13 people with Parkinson’s and caregivers, to scope out the needs, values and desires that the community has for utilizing IoT to monitor their symptoms. This work contributes a set of considerations for future IoT solutions that might support people with Parkinson’s in better understanding their condition, through the provision of objective measurements that correspond to their, currently unmeasured, subjective experiences